Palliative care expert: We are at a crossroads in end-of-life care

Published: Thursday, December 6, 2012 at 4:14 p.m.

Last Modified: Thursday, December 6, 2012 at 4:14 p.m.

For Father’s Day one year, Dr. Ira Byock asked his daughters to give him the gift of making their advance directives, a set of instructions for end-of-life care.

At the time, Byock’s daughters were both in their 20s — one in college and the other just starting out her career. Death couldn’t have been further from their minds. Byock’s gesture was informed by a simple truth that the renowned palliative care physician lives by: We are all mortal.

Byock, the director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, was in Gainesville this week speaking about his mission to ensure that Americans die better. His trip was sponsored by Haven Hospice in northwest Gainesville.

“I passionately believe we have a crisis surrounding the way we care for people in their last phase of life in America,” Byock told an audience of health care providers Wednesday night at the Hilton Hotel.

But, he added, “I think we could solve it in my lifetime.”

Byock, 61, has honed his expertise “one patient at a time,” he said. “I consider myself a serious student in this phase of life. We can achieve a sense of well-being in this phase of life.”

That’s becoming an increasingly important goal as people live longer because of improved medical treatments. At the same time, Byock said, “People are sicker before they die than at any time in human history. We’ve mislearned that more treatment equals better care. Because we are mortal, at some point, that model doesn’t work.”

In other words, we are treating ourselves to death, literally.

It is not uncommon that incurable cancer patients get chemotherapy during the last two weeks of their lives, and people often spend several weeks in intensive care units before dying — which is precisely where they don’t want to be. About 70 percent of Americans die in institutions, even though the vast majority would prefer to die at home.

Treating people excessively is also costly, and often burdensome for patients, Byock said in an interview.

“Part of their (patients’) real suffering is knowing they are losing their family’s life savings and leaving the family worse off financially than they have ever been. This is a uniquely American source of suffering. And it is common.”

While health care systems in Canada and the United Kingdom do a better job of providing end-of-life care, Byock said he is convinced the situation in the U.S. will improve with imminent health care reforms.

“A move toward accountable care is one step in the right direction. We are moving from a system where more is better to one where better is better, where we compete on the basis of quality,” Byock told the audience.

Byock also mentioned that universal health insurance coverage would help the situation, as would tort reform so that doctors aren’t ordering tests to protect themselves.

Byock himself practices according to the principle of “giving people the best care that I possibly can,” he said in the interview. “I need to know who you are as a person, but I don’t want to ignore the disease and its treatments. I help build a therapeutic alliance, and we go forward shoulder to shoulder on a difficult journey. We use medical technology for all it’s worth and focusing on people’s well-being.”

This means involving the patients’ family, close friends and caregivers in treatment decisions and comprehensive care. In Byock’s latest book, “The Best Care Possible,” he chronicles his experiences working with end-of-life patients (www.thebestcarepossible.org).

“He really speaks as someone in the trenches,” said Susie Lyons, a social worker at the Veterans Affairs’ Hospice and Palliative Care Program who attended Wednesday’s lecture. “He’s really talking about a philosophy of care for the whole family.”

“I’m just here to serve patients and families,” Byock said in the interview. “They are really struggling with some of the most difficult experiences that any of us go through.”

He added that the work has taught him to never leave four things unsaid: Please forgive me; I forgive you; thank you; I love you.

“Those 11 words are the four things that matter most,” Byock said. “You don’t have to be dying for those things to matter; you just have to be mortal.”

<p>For Father's Day one year, Dr. Ira Byock asked his daughters to give him the gift of making their advance directives, a set of instructions for end-of-life care.</p><p>At the time, Byock's daughters were both in their 20s — one in college and the other just starting out her career. Death couldn't have been further from their minds. Byock's gesture was informed by a simple truth that the renowned palliative care physician lives by: We are all mortal.</p><p>Byock, the director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, was in Gainesville this week speaking about his mission to ensure that Americans die better. His trip was sponsored by Haven Hospice in northwest Gainesville.</p><p>“I passionately believe we have a crisis surrounding the way we care for people in their last phase of life in America,” Byock told an audience of health care providers Wednesday night at the Hilton Hotel.</p><p>But, he added, “I think we could solve it in my lifetime.”</p><p>Byock, 61, has honed his expertise “one patient at a time,” he said. “I consider myself a serious student in this phase of life. We can achieve a sense of well-being in this phase of life.”</p><p>That's becoming an increasingly important goal as people live longer because of improved medical treatments. At the same time, Byock said, “People are sicker before they die than at any time in human history. We've mislearned that more treatment equals better care. Because we are mortal, at some point, that model doesn't work.”</p><p>In other words, we are treating ourselves to death, literally.</p><p>It is not uncommon that incurable cancer patients get chemotherapy during the last two weeks of their lives, and people often spend several weeks in intensive care units before dying — which is precisely where they don't want to be. About 70 percent of Americans die in institutions, even though the vast majority would prefer to die at home.</p><p>Treating people excessively is also costly, and often burdensome for patients, Byock said in an interview.</p><p>“Part of their (patients') real suffering is knowing they are losing their family's life savings and leaving the family worse off financially than they have ever been. This is a uniquely American source of suffering. And it is common.”</p><p>While health care systems in Canada and the United Kingdom do a better job of providing end-of-life care, Byock said he is convinced the situation in the U.S. will improve with imminent health care reforms.</p><p>“A move toward accountable care is one step in the right direction. We are moving from a system where more is better to one where better is better, where we compete on the basis of quality,” Byock told the audience.</p><p>Byock also mentioned that universal health insurance coverage would help the situation, as would tort reform so that doctors aren't ordering tests to protect themselves.</p><p>Byock himself practices according to the principle of “giving people the best care that I possibly can,” he said in the interview. “I need to know who you are as a person, but I don't want to ignore the disease and its treatments. I help build a therapeutic alliance, and we go forward shoulder to shoulder on a difficult journey. We use medical technology for all it's worth and focusing on people's well-being.”</p><p>This means involving the patients' family, close friends and caregivers in treatment decisions and comprehensive care. In Byock's latest book, “The Best Care Possible,” he chronicles his experiences working with end-of-life patients (www.thebestcarepossible.org).</p><p>“He really speaks as someone in the trenches,” said Susie Lyons, a social worker at the Veterans Affairs' Hospice and Palliative Care Program who attended Wednesday's lecture. “He's really talking about a philosophy of care for the whole family.”</p><p>“I'm just here to serve patients and families,” Byock said in the interview. “They are really struggling with some of the most difficult experiences that any of us go through.”</p><p>He added that the work has taught him to never leave four things unsaid: Please forgive me; I forgive you; thank you; I love you.</p><p>“Those 11 words are the four things that matter most,” Byock said. “You don't have to be dying for those things to matter; you just have to be mortal.”</p><p><i>Contact Kristine Crane at 338-3119 or kristine.crane@gvillesun.com.</i></p>